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De juridische kader rondom genredige baby's is murky at best

A Chinese researcher claims to have created the world's first genetic edited babies, a move bioethicists say is the latest…

A Chinese researcher claims to have created the world’s first genetic edited babies, a move bioethicists say is the latest example of how gene-editing technology is advancing faster than regulation. If true, this experiment could have global effects – and there’s no law that prevents it from happening in the US or anywhere else.

It is still unclear whether researcher He Jiankui truly used a powerful gene-editing tool called CRISPR cas-9 to enhance the ability of twin girls (“Lulu” and “Nana”) to resist HIV. Nobody has independently verified any data and nothing has been published in a journal. Still, Jiankui’s alleged actions have already been widely denounced. “There was inadequate regulation and no serious oversight,” says Arthur Caplan, a bioethicist at New York University. “It’s ethically Swiss cheese, more holes than substance.” Especially egregious, he adds, that the alleged editing was not to repair or fix a mutated gene, but to enhance a capacity . “That’s taking a step down the road of eugenics,” Caplan says. “For et af de mest vigtige eksperimenter som du kan gjøre i historien om eugenikk, er vi på vei av det etiske kløft uten ropes eller beskytteguards eller beskyttelser.”

Now, Caplan predicts, there will be pressure on the Chinese government to respond and clarify its own policy towards genetic engineering of embryos. One common narrative is that salmon Chinese regulations are to blame for these experiments, but that’s not the whole story. Southern University of Science and Technology in Shenzhen, where Jiankui is a professor, has stated that it was not aware of the research. Chinese health institutions have already distanced themselves from Jiankui, and the country’s National Health Commission has asked for an investigation. Og selv om landene rundt om i verden er investorer inden for teknologi og forskning, er der ingen international rammer for denne type engineering. (Perhaps the closest we’ve come is a 201

5 panel of UNESCO experts calling for a moratorium on the research.) A wealthy individual in any country could have privately funded a similar experiment.

In the US, Congress prohibits federal dollars from funding research into genetically editing embryos, says Naomi Cahn, a professor at George Washington University Law School who specializes in reproductive technology. Men genredigeringsembryos selv er ikke forbudt – og selv om det var banned her, kunne det føre til reproduktiv turisme og velhavende par rejser til udlandet for deres designer babyer. “This shows the need for regulators to start rethinking approaches and how to develop more guidelines, both on a domestic and international level,” says Cahn.

And it’s not just governments that will be doing an ethical gut check. Scientific journals will need to carefully determine their own standards for publishing this type of research. “Journals will play a big role and should try to control future human experiments with embryos,” Caplan says.

It’s a difficult topic that raises so many tricky ethical issues. For example, research like this is likely to be met with protest from anti-abortion activists in countries where there are more discussions about embryonic rights and when life begins. Other questions: What do we do about consent when it comes to the children who will be born? What about right-to-life? What makes a good life? “We can not put this off much longer because if the day has not actually arrived, it’s coming soon when researchers will be engaging in these activities,” Cahn says.

Caplan adds that he is not against all efforts to edit embryos. “I just believe that if you’re going to do it, you should be talking with society first,” he says. “This kind of renegade, PR-driven science is not the way to go. Det er så sannsynlig at lukke fremtiden for genredigering som det er å oppmuntre det. “

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